I had the neck dissection on Dec 19, 2011 at the University of Colorado hospital, but little did I know of the problems which were about to surface. I went in and right at the start of the surgery they encountered very extensive scar tissue. They scrapped all the area on the left side removing all the lymph nodes under ultrasonic guidance. All the frozen sections showed nothing but scar tissue. They could not find the little bugger! Dr. Song felt that it was lying on top of the laryngeal nerve embedded under extensive scar tissue. He peeled back all the scar tissue that he could, but he just could not get to it without causing injury to my left recurrent laryngeal nerve, which would create a whole other list of problems for me.
Dr. Song left the OR to talk with my husband and explained the situation and said that the only way to get complete clearance was to take the nerve. So after discussing this for some time with Dr. Song, the decision was finally made to leave the nerve intact and abort the rest of the procedure, as the nerve was still functioning. It was devastating to me to learn that they were unable to contain the nodule. They were in there more than five hours trying to find this stupid thing!
When I had woke up from surgery, I had trouble with my left eye as it kept drooping downward and it was a struggle just to keep it open which has been a continuing ongoing problem. Another issue occurred shortly following surgery. I remembered feeling very light-headed and sweating and then thought to myself, well dummy you just had major surgery of course you are not feeling in the best shape! However, there was I reason I was feeling that way. Somehow going from the OR up to the room they had me in, my IV was not connected correctly, or had become disconnected and so there I lay with blood leaking from my IV. There was blood everywhere and I was soaked from top to bottom. Being that I just had surgery they could not move me too much, especially around my neck area. The nurses had to do it very meticulously moving me only one side at a time removing my gown, removing the sheets and so on. I don’t think that I have seen so much blood in all my life!
I saw the head endocrinologist, Dr. Bryan Haugen who came in along with Dr. Song and many of his residents. Dr. Song was examining my eye and said that it should be temporary and I believe that he called it Horner’s syndrome. Why did this have to happen, why couldn’t Dr. Song find this blasted thing? I almost wished he would have just taken the damn nerve; at least this cancer would be out of me! I only had one drain in place being it was only on the left side and that was removed before I left the hospital on December 21, 2011. I was glad to be home in time before Christmas.
I called Dr. Lund the next morning and left a message with him as I wasn’t scheduled to see him for three more months and explained to the staff that I had a recurrence that I needed to talk with him about. He called me back and he was able to fit me in for an appointment the same day, so I rushed back to Denver. This is a trip which usually takes ninety minutes to get there from where I live, but I think I made it in less than an hour. Dr. Lund did explain the same options to me in having surgery or the alcohol ablation. He explained that the alcohol ablation is a new technique where they inject ethanol alcohol into the suspected nodule which kills the cancerous cells. It is a fairly new technique that the University is using. He explained further that I really should contemplate what was best for me, but he seemed to be leaning more towards surgery as being the best option. However, he said that the decision was mine, whether to do surgery or the alcohol ablation procedure and that he would support me either way.
At this point I was more confused than ever on what to do and I decided to contact Dr. Bentz, just to get his thoughts on all of this. When I was able to get in touch with him I had a long conversation with him as to which would be the best option for me. I wanted to make an informed decision, by obtaining his opinion and feedback on all of this. After speaking with Dr. Bentz, I felt that surgery was probably the best route to go and feeling more confident with that decision. He has always had such a calming effect on me; it was such a comfort being able to talk with him, as it has been a difficult transition losing him as my doctor. He has been there every step of the way and to have that contact come to such an abrupt halt it was hard for me to deal with, even though I know that I am in very capable hands now.
A few days later after speaking with Dr. Bentz, I had a follow-up appointment for surgery with Dr. Song. I was hoping that he could get the surgery done before the end of the year as I had already met my cap for the year and all of our insurance claims were now being paid 100%. Dr. Song, being the most wonderful doc that he is, did his magic and actually pulled it off in arranging his schedule to get it done before the end of the year! I was so glad that would be one less thing to worry about.
The next day after surgery, I had a really bad episode with my Meniere’s disease acting up with really severe vertigo and nausea. I remember the room spinning out of control and feeling so nauseous, it felt like I was going to toss everything up. I was in the bathroom shaking uncontrollably and telling my husband and the nurses to get me some Dramamine PDQ! I thank God that I didn’t experience the full effect with vomiting, as I have many times before. It always seems when my body is under stress it rears its ugly head. I was so grateful when that Dramamine arrived, I could have just kissed those nurses! In addition, I had these compression stockings on my legs which would squeeze my legs every few minutes to keep the blood flowing to prevent any blood clots. It was a bit annoying as every time I had to go to the bathroom I had to be disconnected from them and then back in bed to be reconnected. Also, I still had my orthopedic shoe on as I was still healing from the foot surgery and having to maneuver around with that was a bit awkward as well. I recall also having a lot of numbness in my hands and around my mouth as my calcium levels really tanked after surgery. They were constantly checking my calcium levels and I remember receiving lots of calcium to get my levels back up to normal.
They had me up and walking and as Jerome and I walked the halls, I was amazed to view all of the beautiful pictures and paintings that they had on the walls which was such a nice touch of home. This is something which I think makes the Huntsman Cancer Hospital so unique from other hospitals and treatment centers is that you don’t feel like you are in a hospital. I think the founder, Jon Huntsman Sr., had the right vision when he created this facility. To have a place where patients can have an environment where they can be treated with the utmost care and one that is conducive to true healing. Most hospitals you go into are a cold environment where the walls are just drab, unappealing and it is quite frankly depressing, which makes it difficult for healing to really happen. It is bad enough to have such horrible circumstances to deal with such as cancer, but when you are in a place that makes it a little easier to bear because of the calming surroundings and the wonderful care team you have it makes all the difference!
I ended up being in the hospital almost a week as I also developed the complication of a Chyle leak, which is something that can occur in the lymphatic system during neck surgery. The warning sign that this was happening was that the fluid in my drains had become really cloudy and to treat it they had to switch me to a non-fat diet, which was not so bad. The food at the Huntsman Cancer hospital was really incredible for a hospital. Most hospital food is quite bland and downright disgusting most of the time.
Dr. Bentz and his team of residents were absolutely amazing always ensuring that I had a clear understanding of what was happening and what the game plan was. The nurses on the floor were amazing as well and they really took that extra time to ensure that all my needs were being met. I rarely had to push that nurse call button as they were always on top of everything ensuring that my ice pack was filled, if I needed more pillows or a blanket, reading materials and sometimes to just talk with me about all that was happening to ensure if I had any questions that they were being answered. The care I received at the Huntsman was so phenomenal and it is something that I have never experienced before and is the quality standard of care that truly should exist in ALL hospitals and treatment centers. The care team members at the Huntsman treat you like royalty and I was completely impressed with the service and care that I received. In fact, it has become the running joke between me, my husband and other family members as we call it the “Huntsman Hotel,” it truly felt like you were being waited on like kings and queens in the most royal hotel!
The day that I was discharged, which was on February 27, 2011, I went to the church service they had in the hospital. I tried to sing and just couldn’t reach any of the notes. The tears started to flow and wouldn’t stop! The person sitting next to me gave me a hug and knew what I was feeling without having to speak any words. That was such a crushing blow to me as I sang in the choir for church and now that was just gone! Little did I know at that time that I would not hear those high notes again, at least I haven’t so far. Why would God allow this to happen to me? I had so many questions……… and hoping for some answers.
It looks like we will not be able to get the girls back to the states as Jerome’s company will only pay for travel for him. We just can’t afford plane tickets from Japan to the states right now for them; it is just way too costly for our budget. I guess it is a good thing as they really can’t break from their classes and we need them to take care of the house. Jerome arrived in Utah on 19 February and it was such a relief to see him again as this separation from him has been really hard! I have my better half back with me now and I feel better and not quite so stressed out over everything that has happened; life is always so much better with him around.
The day before my surgery on Feb 21, 2011, I was able to meet up with some old friends from Misawa – Katherine Rollins and her girls, Susan and Christine. That was really wonderful seeing some friendly faces and catching up. They had moved from Misawa when Katherine’s husband retired and are now living in Orem, Utah. They drove up to come and see me before I went under the knife again. Jerome and I went to lunch with them and had a great time reminiscing about the good old times at Misawa. It is amazing to think I have many friends from Misawa that have come back to the states and grateful for the opportunities I’ve had to see them again.
The next day was my thyroid surgery on February 22, 2011 at the Huntsman Cancer Hospital. They had me strip down to nothing, I’ve always been curious as to why they do that in surgery. Dr. Bentz came in just before surgery, which was the first time my husband had met him and he was explaining to him about the surgery and what was going to happen. The reality of all that was happening to me finally set in and I would be waking up in a few hours without my thyroid! When they starting wheeling me into the OR area, I don’t remember much after that as the anesthesia started taking its effect on me.
From what I was told the surgery was fairly lengthy as I was in there for over six hours. It was very extensive and very advanced; the surgeon could not get all of it and some tumor was left on my laryngeal nerve. Following surgery, my throat was very sore and dry and they started me out with ice chips and I remember my husband being there in the PACU (post anesthesia care unit) with me. After being in the PACU for a while they finally moved me to my room on the 5th floor and I was able to see the rest of my family. It was a bit hard to sleep as they were constantly checking my vitals it seemed like every five minutes. Why must they constantly keep doing that? It seems to me it would be more helpful if they would just let a patient get some sleep instead of bugging them so often. I had two drains in place sticking out my neck, due to having dissections on both sides and the drains had to be stripped quite frequently.
As the anesthesia started wearing off and I was becoming a little more coherent after surgery, I overhead my husband talking with my parents that Dr. Bentz was not able to remove the entire tumor and to hear that really devastated me. However, Dr. Bentz was hopeful that the Radioactive Iodine therapy would take care of what was left over which helped to ease my fears somewhat. The first time I saw my neck after surgery I just about freaked out; I could not believe the huge scar I saw across my neck. I looked like I had a run-in with Jack the Ripper at least in my mind it seemed like that to me.
While coming to the states I also had another surgery done prior to my total thyroidectomy. I guess you could say that was another silver lining. I needed to get a cyst removed from my foot which was pressing on a nerve. I had several months of issues with it and was relieved that it was finally going to be taken care of. While back in Misawa, I was waiting on a referral to see a specialist about this issue and so now I am really grateful that this was finally being dealt with. I had that surgery on February 2, 2011 at University of Utah hospital by another great surgeon, Dr. Florian Nickisch. He was in the same practice as, Dr. Timothy Beals, the orthopedic surgeon which we had brought our daughter, Chelsie to in 2004 when she had a severe dislocation of her ankle, which required further extensive surgery. Dr. Nickisch was very comforting as he was aware that I was sent back to the states for cancer evaluation. I was not able to put weight on my foot for about two weeks and had to use crutches to get around. It was approximately two weeks after having the foot surgery that they removed the stitches and I was able to ditch the crutches. The good news is that I will not have to do physical therapy. They have given me exercises to stretch and strengthen my foot and unless I have any further problems I should be good to go and not require regular physical therapy.